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Thursday, November 6, 2014

Another hospital stay for Gianna

3 years ago, at only 2.5 months old, we learned that Gianna has the same blood disorder that I have, Hereditary Spherocytosis.

It was the worst time of my life. 2 ER trips, a blood transfusion, nebulizer treatments, many many blood draws, and finally, our answer. This was my status on November 3rd, 2011 in response to everyone asking how Gianna was and what happened:

I have never felt more helpless in my life. To watch my poor baby hooked up to IVs, having veins blown because they are so small, needing the transfusion. It was hell, to say the least.

After her transfusion, she looked great! Better color, and she was an entirely different baby. So happy!!

I still have this outfit. It's one of my faves!!

Just recently, we spent another 3 days in the hospital. I took her in to the ER on the 20th because she was very lethargic, hard to wake up, 103° fever, refused to take medicine, and barely drank. We sat in the waiting room for 3 hours before we were brought back to a room. The nurse we had was rude, and insisted on making Gianna take Tylenol. While I understood how important getting that fever reduced was, he was very rude. He mentioned possibly needing to give it to her rectally, and I told him no, she is not allowed anything rectally as it could cause hemorrhaging, especially if she's in an anemic crisis. He said it didn't matter, that they WOULD give it rectally if she didn't take it.

After stating that, he attempted to give her the liquid Tylenol via medicine syringe. When he put it in her mouth, and squirted it, rather forcefully, she vomited all over. Which then further made him irritated. He stormed out of the room, not even offering to help me clean it. I don't mind cleaning up, after all, it was my child, but I didn't appreciate his obvious irritation with the situation. He stormed out of the room, and didn't return for another 10 minutes. And that was to threaten that she better take the medicine, "or else". We finally got new sheets and new blankets. Especially since she ruined her shirt.

After daddy brought new clothes for her.

The nurse wasn't the only one we had trouble with. The ER doctor was less than willing to listen to my concerns. I did not catch his name, as he said it very quickly when he first came out, then basically ran right out of the room. He never stayed long enough to take my concerns seriously, or even to listen to them all. I requested a blood draw be done, because of her blood disorder. He asked me why. I stated that I wanted to know what her hemoglobin and hematacrit were. He told me those numbers were irrelevant at this point in time. He asked again what I was looking for. I stated that I wanted to know what her numbers were, and if there was an infection in her body. He stated that there WAS an infection, but it was viral and nothing could be done. He asked me if I'd be able to get an appointment with our pediatrician the next day. I told him that I thought discharging her would be a foolish move, but yes, I could get an appt the next day. I also stated that her pedi would order a blood draw if he still refused. Long story short, he FINALLY agreed to one, to shut me up, as he put it. The results came back, and it was determined that she needed to be admitted immediately.

Despite being admitted, we were held in the ER because there were no beds available on the pediatrics ward. The doctor never returned to our room after agreeing to doing the blood work. I have no idea why, and honestly was not unhappy. We finally were taken upstairs around 6am the following day. It was then disclosed to be that her hemoglobin (9.5 a week ago) had dipped down to 6.8. Her specialist was called, and stated that if it went down to a 6, she wanted a transfusion done. The following blood draw put her number at 6.2, and the one after that showed it climbing back up, so no transfusion was necessary. She had an IV in place for fluids, and medication given 'round the clock (Tylenol and Ibuprofen). Her temperature kept going from 99.1­° up to 104.7° at one point.

On the afternoon of the 23rd, she was finally discharged. She had been fever-free for 24 hours, using the bathroom regularly, eating appropriately, and otherwise acting like her normal self. They gave her an ice pop (her 4th since bringing her to the ER days prior) while getting her discharge papers ready.

While I wish I could say that this is rare, it seems to be common for us. A few days every few months, she is hospitalized. A virus, a cold, etc. I can't wait for the day we no longer fear colds and other illnesses.

Ladies and gentlemen, if you made it this far, I hope you take one thing away from this entire long blog post. Please, if ANYTHING is wrong with your children, listen to your gut. Do not take "No" for an answer. If I had not fought with the doctor, verbally of course, we would have never had the blood draws done, and she would not have been admitted. She would not have had the medical attention like she did. Luckily, nothing bad happened to her, but if that doctor had insisted on discharging her, who knows what could have happened at home. We just don't know. My anxiety was through the roof, but I was angry that my concerns weren't listened to. The doctor's reasoning for not wanting to do a blood draw was "It will upset her more than she already is. We don't need to poke her when she's already not feeling well." He paid no attention to the fact that she had a blood disorder. He paid no attention to the fact that her spleen was enlarged. He showed no signs of being concerned with her well being, and neither did the first nurse who saw her. The only one who cared about my baby was me. And I made sure she was taken care of. The doctors and nurses on the pediatric floor were fantastic and made sure everything was taken care of, and that my concerns were addressed and taken care of.

1 comment:

Oh yes! I've had to fight more then once with doctors for the boys, especially Ben when he was younger. I'm glad that you fought because while yes, maybe she would have been fine until the next morning, maybe she would have taken a turn for the worse! And what if it happened while you were all asleep? What could have happened then? I don't even want to think about it. I NEVER take someone at their "word" when it comes to my kids heath. You want me to believe what you say is true? Prove to me that it is or find me someone who will.

About Me

I'm Kristen! 29 years old, with 3 kids, married for 5 years. 2 of my kids have special needs. AJ (7) has ADHD, ODD, SPD, and PDD-NOS. He is the one that this blog is named after. Gianna (3) has Hereditary Spherocytosis, a blood disorder that affects the immune system. Sofia (11) is your typical tween- snotty, and thinks she's always right.

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